Too many medications, too many doctors, too many side effects, just… too much

Ok just as a warning, I am writing this post half crying and half laughing. It is the same release as Joni Mitchell said.

I have been through a slew of doctors lately trying to get things in order. Internist and gyno who found reason I may be so nauseous all the time. I went to a sleep doctor who I liked very much but he referred me to a rhuematologist because he said certain things definitely didn’t look right. So I went to the rhuematologist, who seemed like a real human being (whoa two in a row??) and said he could send me for a bunch of tests but more than likely won’t have me do anything differently than I currently do now if anything should come up positive. So obviously… screw another test if it won’t matter.

Had an appointment with a new neurologist who came highly recommended down in South Jersey. Drove over an hour each way in pouring rain to hear exactly what I always heard. She did really listen and gave me all the time in the world. Can’t ask for more especially since my situation is so complicated.

I wanted to keep my appointment with my current neurologist since I needed to ask him for some things I couldn’t ask a new doctor. This was a doctor who I could never communicate with. Ever since I told him a little more about what I have been through with my ulcerative colitis, he has been a lot warmer. He is also very respectful when I shoot down 98percent of things he suggests.

I have a lot to say that I just need to rant. Please know that this is purely out of frustration of dealing with doctors, pain and medications and all the other bs I have over the past 13 years. I don’t mean any disrespect to anyone who does things or looks at things differently than I do. We all have been through different experiences… and it is okay.

First, WTF is with the medications that are out there????? Seriously, the side effects are scary as F! And how do doctors who have chronic illness patients expect us to trust them when we have been failed not once, not twice, but more times than we could count?? I ALWAYS had hope. I ALWAYS looked at doctors as the ones to go to for most things. Ask the doctor questions, no one else. No one knows better. That used to be my mentality. NOW, I am texting Sadie and Jaime asking them what they know about certain things. Not because I am too lazy to make a phone call or make an appointment but because I know they get it. I know their bodies are similar to mine and understand how mine works. When I say something, they get it without a second sentence. It takes sometimes months for me to get simple things across to doctors which isn’t their fault. They have tons of patients and limited time.

In the interest of not isolating anyone who may be taking a current medication I am “making fun of,” I will be general. I have had steroids offered to me, IV something, anti psychotic medications and bipolar meds (ones that causes intense weight gain, hair loss, acne all over body, diabetes, etc), meds for fibromyalgia which have little evidence of them doing anything for migraines so WHY WOULD I PUT THAT SH*T in my body??? Also more antidepressants than I can even remember. But for some reason, I can’t seem to forget about the 15 times I did trial and error with them and almost killed myself. I know I have talked about this before so I will spare you intense details but I have had awful, awful, life altering side effects from so many of these medications. I STILL have the suicide notes I wrote to my family when I was on this crap.

To make matters worse, with 99percent of the meds, I was the one who found out why I was feeling the way I was. Not a doctor but me, of course. Seeing as I have to be on top of everything it shouldn’t have surprised me I had to save my own life numerous times.

Sorry for the complaining and whining but I am so damn frustrated right now. I just want to be out of pain. I want to wake up, feel good and go about my day. THAT IS IT.

It would be understandable for me to be nervous about the event tomorrowfor reasons such as : PTSD associated with NYC, speaking in front of about 60 people is nerve wracking, etc. But no. That isn’t why I am nervous. I am nervous because I want to do my best and I am scared beyond words that it may be too long of a day (for me, not the average person) and I will be in so much pain that I won’t be able to articulate what I want and need to say correctly. Last patient panel I was on, it was so interesting and I would have loved to stay longer (and come earlier) but as soon as my portion was over I couldn’t get out of there fast enough. I was almost in tears from the pain.

I just hate all of it. I hate there are no medications out there that just WORK without the horrendous side effects. I hate how I truly believe that some of my close friends understand what I deal with and what is going on with my body/brain better than anyone else. Only, they obviously have no power to prescribe me anything or be there in any other way than support.

I am definitely going to sound like a druggie but all I want is to have something I know takes my pain away so every morning when I wake up, I know I will have something that will allow me to function. But that won’t happen.

About Marisa Lauren Troy

I am a 28 year old girl who was diagnosed with ulcerative colitis at the age of 13, and since had 14 major operations. I have been in and out of the hospital due to many complications, blockages, and usual UC symptoms.

Hi Marisa-
Having ulcerative colitis is very frustrating and debilitating. I said to my parents, ” It’s not bad enough that I am a worrier, now I have a disease to prove it!” I know doctor’s say they aren’t sure what causes it, but I know stress definitely compounds the issue. Many doctors only write out prescriptions in hopes that it puts you into remission regardless of the side effects. Whenever I see commercials for new medications I almost laugh when they say what the side effects are…why would I want to take something if it could cause sudden death, a heart attack, or stroke. These are commercials for various meds. not just ones for G.I. troubles.
Sometimes I pretend that I don’t really have colitis when I am in total remission and eat and drink what I want. Well, we all know that it will catch up to us sooner then later. I haven’t had a flare-up since I went on this Aloe Vera product until two weeks ago. A friend introduced me to this great trail mix snack that fills you up for hours. Since I am trying to lose weight, and they are delicious I thought I would give it a try. Now I know nuts and dried fruit aren’t my best friend, but I thought a little a day wouldn’t hurt me. Two weeks later I am thinking it’s better to be a couple pounds heavier then deal with this flare-up. I must start eating cleaner and up the Aloe Vera product till everything calms down. It’s so hard though when you are at family picnics this time of year. I want to eat and drink what everyone else is, but I know that I have limits and I will pay later if I don’t follow them.
I know you have been struggling for many years, but don’t give up trying to find natural solutions to heal your body. I hope you can find relief and healing soon. Thanks for sharing your story so that other’s know they aren’t alone with this disease. I know it was something I kept to myself for a long time because I was embarrassed, but finding blogs like this one is very helpful. Thanks…and good luck at your talk if you haven’t given it yet.

Well said! That’s just about how I feel right now. Life is hard with two auto immune diseases and I am still waiting for that miracle medicine. Good luck, hope you find relief soon!

http://risaroo86.wordpress.com Marisa Lauren

Ah very hard! Hope you find some relief soon too <3

Jodi

wish I knew something to make the pain go away. I wish you didn’t have to be so strong all the time. But you are and you have come so far.
Keep putting one foot in front of the other. Try to enjoy the panel, I send good vibes to help you through. don’t give up looking for something that will work, listen to yourself as always.You are still the best at taking care of you!

val0525

Marisa,

I wish I could make things better for you.

I know that your contributions to the panel will be of great value.

Keep up the amazing work you are doing. With everything that you deal with every day, you have done a great job and made a lot of progress. Listen to your body and do whatever helps you. You are a brave young woman and I certainly look up to you as a great example of how some deals with adversity every single day.

I will be anxious to hear how it goes.
Thank you.

http://aguywithcrohns.com A Guy With Crohn’s

So so so sorry you are going through this. ((((((Hugs))))))

I can’t remember, and something tells me you have, but have you looked into long term pain meds. There are specialty pain specialist doctors that deal with these things and won’t look at you like you are a druggie. I see it all over the web from so many people on how they take meds just to keep the pain away.

Other than that, I don’t know what else to offer but sympathy. I do know a little of what you are going through. I have the been there done that scenerios. I also have seen too many doctors in my life just for one problem. In fact, I am doing that right now with my knee.

You are a fighter and I know you will get through this. I also know you know this

My best advice I can give right now….tell your fur babies to give you some good snuggles.